Chips, Cheese and Sometimes Marshmallows

Life with 2q23.1 microdeletion syndrome (chromosome 2)

Chips, Cheese & Sometimes Marshmallows? What? Let me explain, if anyone knows my daughter Asia this completely makes sense:) Not only do we have many medical issues but, food issues are one of our major daily obstacles. You'll see...

Asia's List of Symptoms (2q23.1)

Whether or not all of Asia's Symptoms are related to the 2q23.1 microdeletion is unknown at this time:

At this time her symptoms are: Seizures, Hypotonia (muscle weakness), Development delay, Motor Delay, Language impairment, Non-verbal, Ataxia, Behavioral problems, Sleep disturbances, Short attention span, Repetitive behavior, Aggression, Autistic-like Symptoms, Sensory Processing Disorder (hypo-sensitive), Tongue-tied, Sacral Dimple, Possible Macroglossia (large tongue), Sandal Gap on foot, Constipation, Blepharitis, Hearing loss & Microcephaly.

~This list may be edited with new information~
There are additional symptoms with this rare syndrome that Asia does not have.

Many people contact me to ask what type of testing Asia had to get her diagnoses. Asia had a simple blood test performed which is called a "Cytogenic Microarray". There is a post in the blog that goes over this a little more.

Conact Info and Support Group

2q23.1 Microdeletion Syndrome has a great support group on Facebook. It is a closed group where parents can discuss their questions/concerns about their children with 2q. When logged into FB just search 2q23.1 Microdeletion Syndrome and find the closed group and "join". Also, please feel free to email me with any questions at seasonatwater@gmail.com

Sunday, February 3, 2013

Food Fights

Every meal with Asia right now is a all out food fight. We never EVER give her her own plate of food or a drink right now. It will be a matter of seconds before it's on the floor or in your face. Even giving her a bite you have to be tricky and patient. Asia is fast, she'll hit that utensil out of your hands so fast you don't even know what happened. If she hates something she is eating she will take it out of her mouth and throw it at you. Always be on guard:) I sure hope this ends someday-she use to eat so well. Anything you gave her she would eat. We could even try to help her use utensils (which she can not currently do) and it would be all right. Now, expect drinks in your lap and food not only in your face but, the faces of all those dining. Sounds funny-it is usually not. Dad gets pretty heated over it and I completely understand. You spend a couple hours making dinner for the fam and it gets tossed on the floor. Yesterday was so funny-she would take one bite and throw the other half on the floor. Half of a french fry-on the floor, half of a piece of cheese on the floor, every single time-I found that kind of amusing even though she was doing it out of anger. Tonight at dinner after the usual tantrum she ate? She loves avocados right now and she would take a bite-threaten to take it out of her mouth and then just eat it. Nice change. I think she threw down several other options but as long as I gave her the avocado-she was good. She inadvertently coughed/gagged on her second to last bite of applesauce (mixed with meds) and sprayed my face but, again it was unintentional. Using a straw for drinks seems to help. After dinner even the tub and getting ready for bed was pleasant. She talked nice to the baby and even let him play on her bed (little unusual). Why the change?????? I wish I knew.   A big helping of avocado's-little salt, little lime? Get out the straws? I'll try it again and see.

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